Letter to Family & Friends

If you are a TC patient, please feel free to print this letter and share it as is, or edit it to make it your own to share with those you wish to better understand.

Dear Family and Friends,

This letter was written in hopes of improved understanding of those who live with symptomatic Tarlov cysts and the chronic pain, nerve damage, and life altering changes they cause.

Having cysts on my spinal nerve roots and the resulting nerve damage causes chronic pain and means many things in my life change, and a lot of them are invisible. Most people do not understand about relentless, intractable pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me and my medical diagnosis, Tarlov cysts.

Please understand that living with this medical condition doesn’t mean that I am not still trying to live a “normal” life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don’t seem like much fun to be with, but I’m still me… just sometimes stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I focus on what I CAN do, not what I can’t!

I worry about how the changes in me are affecting you. I care very much about my family and my friends, and I’d still like to hear you talk about your life, your family, and your activities. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship.

Please understand the difference between “happy” and “healthy.” When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I’ve been living with this diagnosis and its symptoms for years; I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in pain, or not extremely fatigued, or that I’m “getting better.” Please don’t say, “Oh, you’re sounding good!” or “But, you look so good,” as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery.

Please understand that being able to sit, stand, walk, or be sociable for 15 minutes doesn’t necessarily mean that I can sit, stand, walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand, walk for thirty minutes at a time yesterday doesn’t mean that I can do the same today. With this medical condition, it gets more confusing every day. It can be like a yo-yo. I never know from day to day how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style.

Please understand that chronic pain is variable. It’s quite possible that one day I am able to take a walk, go out to lunch with you, go shopping, or to church, although when I get home or the next day I’ll have trouble walking to the next room. Please don’t be confused by saying or thinking, “But, you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do.

Please understand that “getting out and doing things” does not always or necessarily make me feel better, and can often make my symptoms worse. I cherish the times I can be more sociable and active. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don’t you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I pay for it dearly. You can’t always read the pain on my face or in my body language. The pain is not caused by depression. The sadness and sometimes irritability that you might hear in my voice (even though I try hard to hide it) is from the pain and adjustments I have had to make in my life to go on, and it is due to the changes such as the loss of my job/career, my inability to jump in the car whenever I want to run errands, see a movie, go to a restaurant, visit friends, shop, clean my house, work in my garden, etc. as I did previously.

Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can’t be put off or forgotten just because I’m somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor’s office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone.

You may have wondered why I don’t just take something stronger for the pain. I have tried many different medications, and unfortunately a lot of side effects. I also had surgery which did not result in significant improvement for me, although it has for many patients. I have developed many more cysts since my surgery in cervical, thoracic, lumbar and sacral spine. I am not a good surgical candidate, due to several CSF leaks requiring blood patches over the years, as well as developing arachnoiditis, tethered cord, and Chiari. I have not made a final decision on potential surgery in the future, but that would require multiple surgeries due to perineural cysts at multiple locations.

These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there are only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are indicating a higher percentage of improvement and many patients are much improved.

If I seem irritable or distant occasionally, it is probably because I am experiencing an increase in my symptoms. It’s not how I try to be.

As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, cleaning, gardening. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of “understanding” from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking moments was when my 9 month old grandson, with a big smile on his face, reached his arms out to me to pick him up and hold him, and I could not lift him. My grandson is now a teenager and my granddaughter is school age; I am concerned that they will never know their grandmother as the energetic and strong woman I once was, although I so enjoy spending time with them. These may seem like little things, but it is sometimes those little things that make you aware of the changes Tarlov cysts have caused. Thank you for trying to understand what I myself do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this medical condition has blessed me in many ways. I have met many new friends along the way and find myself surrounded by God’s blessings in my life each day.

My career was spent as a nurse and medical educator. I plan to contribute my time and energy to the best of my ability with God’s new direction for me in my life. I have been and will continue to focus on the future growth and operations of a Foundation, whose purpose is to promote and fund research, improve education for the medical community and the public, advocacy for Tarlov cyst patients and for improved understanding and treatment for Tarlov cysts. The Tarlov Cyst Disease Foundation’s vision is of a future in which Tarlov Cyst Disease is well understood, accurately diagnosed, and easily treated, so that those afflicted should not suffer needlessly. We hope to make the path a little easier for others with this rare diagnosis; we hope our efforts will bring about a cure in the future.